My last cycle was not a happy one - in hospital for a few days - in isolation - drove me made!!
Just come back from Centre Parcs - loved it. Have also booked myself onto the Penny Brohn course in January - looking forward to that.
My chemo has now finished. Having a scan on 30th with results on 5 January. Scarred or what. I am fearful of the results but also of the future - no chemo to fight the little buggers - what happens now - the waiting game. I also don’t understand why they cannot remove the lymph nodes - wont this give a better future - removing any cells that might be still lingering in the nodes?
Also, the onc made me feel a little pathetic, saying that I struggled wth Carbo but other manage with carbo combinations. Did I feel weak or what. Oh well.
Tina, have a great time in Canada
Scaryfox - hope the chemo does it stuff and have a great Xmas with the girlfriends
Claire - sorry to hear your news - let us know how you get on with the carbo combination
Margaret - thinking of you
Thinking of everyone - have a super Christmas and new year
Love Kelly
Hi Ladies
Just logging in to check how everyone is doing? Hope you have all managed to enjoy xmas as much as possible
We have been really enjoying ourselves in canada- had a few days with relatives in belleville and then a few days in ottawa before heading to the ski resort by montreal. Sadly a hardened area in my scar line has become suspiciously harder and lumpier in the last few days and my head is well and truly up my ar*e. To top it all off, there has been a huge family feud today and Ive spent the day on valium in an absolute state and I am now deadset on coming home tomorrow. This trip has cost us a fortune and it will cost us even more to get home because the insurance wont cover the flights home despite the new lumps. They say there is no ‘medical advantage’ to getting home a few days earlier. So we either pay ourselves or I stay in this place feeling hurt and uncomfortable. Total nightmare…
I see my onc next week anyway on 6th so no doubt they’ll scan me and I guess it’ll be more chemo seen as surgery and rads are no longer an option. Just wish someone would give us a break. My husband is in pieces the way I’ve been treated by his family.
Kelly- sorry to hear you had a crappy time last cycle. Fingers are crossed for you for your scan later this week. Really hope its good news x
Claire, scaryfox, margaret, sandra, sarah etc- hope you girls are ok. Do let us know if/ when you can x
Speak soon
Tina xx
Hi all - nearly 3 am and I am having one of my many sleepless nights. I should be feeling a little more settled. Saw Onc on Friday after my scan and he said everything stable. Suggested a brain mri to rule out any tumour as my eyesight has taken a nose dive through a cataract ripening much quicker than it should. Anyway I am sure there is nothing medically wrong with my brain - don’t know about psychologically though!!! Am also having my meds reduced to 1500 mg twice a day. Onc thinks this will help with my side effects. Time will tell. I am starting cycle 4 on Thursday all being well and I am to have another CT scan after 6 - 8 cycles all together. Onc says if I am still stable at that point I can come off all chemo and have a further CT scan after two or three months. Keeping my fingers crossed for that.
Christmas was great spent time with the family who came over from Holland and down from Chester. The thing that marred it however was that my sister had quite a serious accident and fell down her stairs at home. Lucky for her she has a couple of cracked ribs and a huge bump on her head but it did spoil things a bit. However she is bed bound and is in considerable pain.
Anyway enough of me.
Tina I am so sorry to read about the trouble you are having in Canada - this should have been your time and for your family to behave like that is outrageous. I can well believe you feel like coming home early. Perhaps you and your husband can go off for a couple of days by yourselves and try and forget everything else. It is really difficult waiting for scans and more particularly results. I will keep my fingers crossed for you. Anyway do try and enjoy the rest of your trip.
Hope everyone else had a great Christmas without too much worry!!
Hi everyone,
A belated “Merry Christmas” to you all.
I’ve not been too good and was in hospital for a couple of weeks before Christmas all due to chest fluid. They drained 6.5 litres from my left side.The right also has fluid which will be sorted in the New Year, if I can last that long, which I’m doubting as I am really breathless again.
My left lung hasn’t re-inflated properly meaning the pleuridis didn’t have much chance of working.
My onc stopped my chemo, as it isn’t working. I’m due to start Taxol at the end of Jan…I’ve got lumps popping up all over the place…add them to the chest fluid and I feel it’s very much an uphill battle at the mo.
I’ve read your posts and wish everyone a better New Year, my fingers are crossed for all of us.
I went to a golf club spa hotel for Christmas with my OH, ED, YD & her OH, and their baby. We had a good time, I was pleased we’d arranged this as with how I was it would have been difficult at home, whereas everything was done for us and we spent loads of time together.We went xmas eve, returning home on the 27th…ED’s Birthday!
I little down at the mo. Have found another lump. All the others seems to have reduced but finding another lump is horrendous. I had hopes for the future - that I had fought it off for a little longer - this new lump has scarred me to death.
Does anyone know abou Disability Living Allowance or any other financial help you can get. If I need to take more time off work we will be struggling financially big time?
Tina, I agree with Margaret you and your husband should enjoy Canada - go off on your own for a few days.
Sandra - golf club sounded nice. Hope the Taxol in January does it job for you.
Margaret - hope your sister gets better soon. Am surprised that you are having 8 cycles - why 8 when, as far as I am aware, 6 is the norm. It is strange - CT scans are things that you desperately want but also dread!
I am posting a link to the BCC benefits information publication which you may find useful, please also feel free to call our helpliners more support and info on 0808 800 6000, weekdays 9-5 and Sat 9-2:
I’m receiving the DLA. It was my Macmillan councillor who filled in and sent the forms for me. I didn’t do anything. I now get the payment automatically paid into my bank.
Have you got a Mac person you can ask, or perhaps give them a ring.
Hi Ladies
Sandra Im so sorry to hear you have been having such a hard time the spa break sounds like just what you needed. Hoping the docs can make you feel more comfortable the chest fluid sounds a nightmare. Lots of love x
Kelly I really feel for you- I am in the same situation as I have a few biggish hard lumps in my scar line that seem to have become active in the last few days. My chest muscle aslo feels sore and I am preparing myself for the worst when I see the onc next week. My husband is in bits with it all- not to mention what has happened here. We have been unable to get a flight home- the insurance wont pay as its not medically advantageous to cut our trip short by just a few days especially with the bank holidays etc. So we tried to change the dates of the flight and just pay an admin fee but flights are all full. Total nightmare. We have now booked a hotel near montreal airport for 4 nights so we will try to enjoy that. Just so bloody annoyong after paying £1300 to stay in this ski house, that we have to pay another £400 to get out of this environment when we are the innocent party. Hey ho…
Kelly, in terms of benefits, you can defo claim the top amount of DLA which is just over £120 per week. I am also getting ESA (employment support allowance) which is £95 pw. The esa can be backdated and they have done this to the date of my recurrence in August so thats been a big help. The ESA that I am getting is not means tested but contributions based so they dont take mine or my husbands income into account. My half pay runs out next month so I am very relieved to be receiving around £850 in benefits as it at least covers our mortgage (still well pi**ed off we didnt have critical illness cover). Speak to the benefits advisor at macmillan and she will sort it for you. I didnt even fill in the form for DLA she did it all. She could also apply for a macmillan grant for you to help with living costs/ travel costs to hospital etc- that is means tested though but the amount you are allowed to have spare each week is quite generous. All the best with it x
Claire, sarah, margaret, scaryfox and everyone else, hope you are all doing ok xx
Love to you all xx
Kelly - I have been getting DLA since I was first diagnosed five years ago. In my area there is a Disability Advice Centre who helped with the forms which are mammouth. Suggest you definitely do not try to complete yourself. If you do not have an advice centre near you go to CAB or if your McMillan Nurse is happy to help avail yourself. I am on high mobility which also entitles me to get a car and medium care. I am sure I could ask for this element to be increased but frankly at the moment I can manage quite well. As to the Mobility part if you get high allowance (which I am sure you will) and you are under 65 then you would be entitled to a Motability Vehicle. You do not necessarily have to be a driver yourself so your other half could drive the vehicle. With the car comes free insurance, tax disc breakdown and new tyres battery etc. Look on the Motability Site it will give you all the info you need. You will also automatically get a blue badge which in itself is extremely useful. It also entitles you to other benefits which may be of help and use to you. Hope this helps.
As to your new lumps how scary is that. Lets hope the investigations you have prove not to be as bad as you think.
I am going through this myself at the moment as I am due to have my brain mri tomorrow and see my Onc Tueday for result. Went to hospital to collect my next cycle of drugs but as I am on the cusp of another infection was given an antibiotic instead and told to hold fire with cycle 4 until Monday but if I feel rotten to call hospital immediately. There is just so much ill health all around at the moment with the flu coughs and colds that probably the best place is to go to a desert island by oneself!!
Apparently with the chemo that I am on my Onc says some people stay on it for years. Horror, Horror. Anyway I am hoping to have my next ct scan after the next three cycles making six cycles all in. I am also hopeful that if my lumps have not grown I can come off all treatment for a couple of months and perhaps get away on holiday. Time will tell.
Hope everyone else is doing ok and I wish you all a good new years eve. I have been told I must live in the now!
Hi All
Just a quickie to say hello and happy new year to my triple neg friends Hope you are all feeling okay and 2011 is kind to us all.
I fly home today never wanted to get home so much in my life- might as well have slotted 4K down the grid coz this holiday has been a nightmare. Will have to face the evil in-laws at the airport just hoping they stay away from us.
Im not feeling great, suspect aches in my right side, increasinly bloodshot eyes and hard lumps appearing in my scarline so to say Im dreading the next scan and onc appt on weds, is an understatement…
I still live in hope that I will be declared ned- feels like ive had more then my fair share of bad luck (if only it was shared out fairly eh!!).
All the best
Tina xx
Hi Tina, so sorry about the nightmare you are having. I will be thinking of you on Weds and Margaret too, for your result on Tuesday!
I have just picked up a cold, its terrifying isn’t it the amount of bugs around at the moment. Just when i thought the pain in my chest couldn’t get worse I now have a cough and sore head! Still soldiering on with the weekly Abraxane though taking a break from the Avastin due to some weird side effects.
Anyway - wanted to wish everyone happy new year - hope it brings some good news… any resolutions? I am trying to be more creative, I like drawing so have been doing little pictures for friends and stuff. Not enough energy to do much, but aiming for just a little something every day.
Haven’t been posting for a while due to Christmas torpor(is that the right word ?- my brain’s gone!). I’m pleased that Scaryfox and Sandra have been back on this thread - your chest problems sound awful, Sandra - I really hope they can do something to help you. Thinking of you too Margaret with your scan results this week - waiting really is the most hellish thing. Which chemo.are you on - is it Xeloda? Hope it does the trick and provides stable results. If it is X. - that’s the next chemo. in line for me - I’m in no hurry to find out any more about it! Kelly - are you going back to work soon? Hope your scan results this week are good - let us know how you get on. Tina, thanks for your pm - but what can I say about your holiday - you must be seriously pi**ed off with it all. I’ve experienced hols. with friends and family which didn’t exactly go to plan, shall we say, and you just want to leave but are stuck - awful! And as if you haven’t got enough to worry about! Claire, hope you’re OK.
I’m OK but found Christmas extremely tiring this year. My arm is stiff and painful with after - effects of rads still - though lymphodema sleeve helps a bit. Seeing onc.in a couple of weeks - worrying about everything re-growing - it never ends, does it? Still, I’m so grateful about everything now after last year. Resolution to walk regularly and (of course!) lose weight. Hope to start pilates or go back to yoga (had to stop after it caused a prolapse in 09) - will help my arm too, hopefully.
My good news that my brain mri turned out fine = I knew it would be.
Scaryfox - hope your cold goes soon. I live with a permanent cough every winter and yes it does make your chest sore - i think the persistent coughing pulls muscles. I also know what you mean about lack of energy - I try everyday to do something but most days just showering, getting dressed and making my bed (only a duvet) is enough. My life has completely gone on hold for some time now and that makes me feel very depressed.
Tina - hope your flight home was not too strenuous and that your aches subside soon. How did your Onc appointment go. Well I hope.
Sarah - yes Capecitabine is Xeloda. I will say no more unless you want to know how it has affected me. Do try and keep up with the arm exercises as this can be very beneficial in the long run. I too want to lose weight. Prior to my rediagnoses last August I had lost nearly four stone through Slimming World. Since then however I have been comfort eating sweets chocs cakes and the like and I am ashamed to say that I have put back at least two stone. Such a shame as I was looking and feeling much better. Now I feel like sh… again!! Everyone tells me not to worry about the weight gain but it was so difficult to take off. I am hoping that once I have done my six cycles and I can have a break I will be able to get my brain once again round dieting. Time will tell. Anyway enough of my depression (sorry if it has rubbed off on anyone - not intended - but I do find this forum very good to vent how I feel.
Well - not good news. Nodes in neck have shrank but littles ones have appeared. Also new ones in chest. Fluid around heart probably due to cancer cells or irritation from lumph nodes. The lump on my chest which the onc though was radiotherapy damage is now probably cancer. She is not 100% sure and they are not going to do a biopsy - wait to see if chemo works. Probably cancer cells in the cartlidge. She gave me 2 years but stats are there to be proven wrong!!!
Going to have radio first to help with chest lump and lumph nodes. Then start on docletaxol. I see so many other names, but what is there after docletaxol as hormone therapy not an option. Onc said - observation she didn’t know of any other chemos. I will ask about the mutant gene as cancer on paternal line but not maternal line.
Ho hum - life is sh** - how do I live my life to the full now. Positive thinking I will beat this as the cancer has not got to any of my vital organs. But how do you live a life now in fear and the unknown - can I go back to work, will the docx work…
Hope everyone OK - I think I need my Penny Brohn visit now!!!
Hello ladies
Home at last- arrived Monday night after a hellish few weeks. Saw the low-life in laws at airport and on plane but no apologies, remorse etc. Husband in bits as if he hasnt enough to deal with at the mo…
Kelly Im so very sorry to read your news. On a positive Im relieved for you that organs are clear (got to be good news?) but its really not fair that there is progression elsewhere You sound really down and Im not surprised. What chemos have you had so far then? I had docetaxol (taxotere) as half of my primary regime (with fec) and my recurrencehappened within weeks of finishing the tax so it never worked for me. BUT Tax has great results overall seems I was just unlucky. there are various types of tax chemo- taxotere, taxol, abraxane etc. Im sure there will be other options for the future too as there are loads of bc chemos. As for the gene testing it miught be worth a shot as if you carry the brca1/2 gene mutation then you would be eligable for parp inibitor trials. These have had very promising results with triple neg ladies but they are just in trial phase in this country and only brca ladies can access them. There are only a few places doin the trials- not sure where you are but most are down south. I paid for brca testing as I didnt meet nhs criteria as no family history. Had results just before xmas and Im negative. Great news for my little boy and niece (been worried sichk that they may also be carriers if I was) but not so good news for me. PM me if you want the details of where I had tests etc- only took 6wks much better than waiting 9-12m on nhs. thinkin of you x
Margaret- Fab news about the MRI Great to hear some good news. How do you find the capcetabine? That chemo has been mentioned for me but Ive heard it can cause bad stomach, sore hands/ feet etc? Think they would go for carboplatin as my next chemo if I need it (I naturally live in hope I wont!).Dont worry about your weight- Ive put on over a stone since beiong diagnosed last Jan but I wasalready overweight. But its the least of my worries I fully intend to enjoy my food and drink and not to worry too much about my shape. Easier said than done though I know! x
Claire- thanks for the pm I will reply in a min Sorry to hear your chemo has been delayed but try and enjoy this bonus ‘well’ week x
Scaryfox- hope you are feeling a little better and stronger? Do update us when you can. Thinking of you x
Sandra, Sarah and anyon else Ive missed- hope you are doing okay? x
Im feeling okay- saw my onc today (the one who was very blunt and negative last time I saw her in sept). She was very nice and was pleased with how well I look and feel. I have a ct scan within the next week (get appt tomorrow) and she has also requested an urgent bone scan. I see her in a fortnight to discuss results and the way forward. She had a feel round and liver felt normal- no tenderness etc. Id been worried by bloodhot eyes but she said just tiredness. Pointed out swelling by collarbone and she agreed there was something there. She had a good feel of other breast which has been causing me lots of discomfort in the last few weeks and they may give me a mammo as she thinks there is an area of minor thickening. I have a few changing lumps in an large area of hardened tissue along scarline- Ive noticed changes in the last week or so but she is reluctant to biopsy them as the area is so damaged from rads that they may not heal and if I need more chemo, that would obviously cause probs. She measured them and will keep a close eye over the next few weeks. So it all depends on the scan. Im praying for lady luck to help me out. Will keep you posted.
Firstly, Kelly - also very sorry to hear of your progression- absolutely shi**y news . The taxane chemos are meant to be strong and effective and so I hope you get good results. Thinking of you.
Tina - sorry you had such a disappointing holiday. It’s good news that your liver is fine and I hope the other symptoms don’t turn out to be too serious. It’s good you’re being monitored closely by your onc.
Hope everyone else on here is coping,
hi everyone
still very quiet on here- really hope ur all ok ladies Anyone heard from Rikva? Hope she’s doin ok she hasn’t posted in ages?
just thought I’d check in to see how everyone is doing? Sarah good to see you posting hope you are well?
I have my ct + bone scans tomorrow. Feeling anxious to say the least. Having some bone pain recently in sternum, collarbone + ribs so that’s a bit worrying. Lumps in scar line worsening + feels like collarbone lump growing. Or is it my imagination?! All will be revealed…
Results appt next weds but I will see my rads onc tomorrow (he has a clinic in the same place I go for complementary therapies) so I plan to put him on the spot + ask him to have a quick look at the scan images on the system. We get on well so I’m hopeful he’ll oblige
look forward to hearing from you soon
love tina x
I am new to this thread and indeed this website. I am TN, diagnosed June 2009; 0/11 lymph nodes, lumpectomy, dd AC/T + 36 rads. Despite this, my chronic cough for several weeks (2 negative chest X rays) showed enlarged lymph nodes in chest when I had enhaced CT scan. This was ordered once I had blood in mucus. Spent a few days till Xmas Eve in hospital after bronchoscopy; which detected (right on the spot where I though it was; you are not meant to fell anything in the lung) an adeno relatied to orginal TN BC. Also mets in rib and 4th TV. MRI brain shows small lesion. I am awaiting second opinion before commencing treatment, which will probably include avastin, gamma knife (for the met in the brain) + platinum salts and radiotherapy!! Keen to get PARP inhibitors, but need to find phase I.
I have read all the back comments on this thread, but need to re read the last five pages. Look forward to comments and advice. Normally I write in a more witty entertaining style, but at the moment just feel a bit fatigued.
Hi Josephine
welcome to the thread- really sorry to hear ur news. Sounds like u are having a terrible time at the mo. Sounds unusual given u had no nodes involved? I only had 1 positive node+ no vascular invasion (39mm grade 3 tumour) + my team think my experience is very rare. I am in tomorrow for scans I’m preparing for the worst + am expecting to be back on chemo in the next few wks (I’m hoping the lumps in skin of scarline are the only things I’m dealing with but have several other concerns).
I’ve been told carboplatin will be next 4me. Had fec + tax 1st time round (finished June 09). Parp inhibitors are currently only being trialed with brca1/2 ladies- have u had genetic tests? I paid for screening but came back negative. If u want a 2nd opinion ask ur gp to refer u 2the royal marsden. I had an appt within 3wks…
When are u back in to plan treatment? Do lets know how u get on
tina x
In addition to the support you have here please feel free to call our helpline for further support and information on 0808 800 6000, the line is open 9-5 weekdays and 9-2 Sat.
I am posting a link to the BCC secondary support and information which you may find helpful too:
You sound really down and Im not surprised. What chemos have you had so far then? I had docetaxol (taxotere) as half of my primary regime (with fec) and my recurrencehappened within weeks of finishing the tax so it never worked for me. BUT Tax has great results overall seems I was just unlucky. there are various types of tax chemo- taxotere, taxol, abraxane etc. Im sure there will be other options for the future too as there are loads of bc chemos. As for the gene testing it miught be worth a shot as if you carry the brca1/2 gene mutation then you would be eligable for parp inibitor trials. These have had very promising results with triple neg ladies but they are just in trial phase in this country and only brca ladies can access them. There are only a few places doin the trials- not sure where you are but most are down south. I paid for brca testing as I didnt meet nhs criteria as no family history. Had results just before xmas and Im negative. Great news for my little boy and niece (been worried sichk that they may also be carriers if I was) but not so good news for me. PM me if you want the details of where I had tests etc- only took 6wks much better than waiting 9-12m on nhs. thinkin of you x